Myasthenia Gravis

Myasthenia Gravis - Frequently Asked Questions

Should a person with MG receive vaccinations?

Can a person with MG give blood?

I have all the symptoms of MG and not one positive test. Also, I had polio 50 years ago. Is there a test that can distinguish between these problems? The only test not done is a CT scan looking for a thymoma and the neurologist says that would be a waste of time and money.

How common is it for myasthenics to have other autoimmune diseases? I have been told I have myasthenia, along with arthritis and fibromyalgia. Could that be possible? If it is possible, why?

My mother is reacting badly to Imuran, which has been prescribed to control her Myasthenia Gravis. She is also on Mestinon. Her symptoms include retching, throwing up and increased salivary flow causing her to spit up non-stop. She does fine on the Mestinon alone, but we've been told she needs the Imuran for long term use. We are wondering if there is an alternative that can be used to the Imuran.

I was diagnosed with MG 20 years ago and was in complete remission for 13 years and it suddenly came back. About 5 years ago I underwent a thymectomy and am not on any medication. Sometimes I have weakened vision. Should I worry about greater symptoms coming back later?

I would like some information regarding MG in a 12 year old girl. She has gone through all the standard testing and was found to have a tumor on her thymus gland. Is the treatment regimen the same as in adults? What would be the long term side effects of removing the thymus gland of a 12 year old?

I had a thymectomy over 10 years ago. I have been in partial remission since that time, with the MG symptoms never as bad as they had been before the surgery. (I could barely walk, brush my hair, eat, hold a pencil...even while taking Mestinon around the clock...it was horrible). I'm glad that I had the surgery, however, I have had various medical and non-medical people react in horror when they found out that I had my thymus removed, because of the thymus' part in T-cell production and the immune system. My question -- does having no thymus wreak havoc with the immune system, does it make me more susceptible to flu/colds etc.?

I was diagnosed with MG in 1992. My initial symptoms were blurred vision and general weakness. A Tensilon test was positive for MG. Lately I have been having some really strange symptoms: I cannot feel hot or cold in my fingers (pick up hot utensils without hotpad, etc.). I rapidly rub my middle finger on my thumb. I have what my doctor calls ataxia. I have moderate short term memory loss. My question is this, should I be concerned about another problem, or are these symptoms relatively consistent with MG?

I take 180 milligrams of Mestinon daily and am experiencing double vision. Will this medication improve the double vision?

Question: Should a person with MG receive vaccinations?

Answer: What sounds like a simple question, is not. You should always discuss with your doctor whether to receive a vaccination.

The decision is dependent on whether you take immunosuppressive medications (drugs like prednisone, Imuran, or cyclosporine), your age, and your other medical conditions. Most vaccinations, specifically Influenza (flu) and Pneumovax, are made from killed virus or bacteria and do not produce infection but induce an immune response, which protects the patient from a true infection.
A myasthenic probably would benefit from vaccination to prevent worse infections. However, the possibility exists a vaccination could make myasthenia worse by activating the immune system.
Some vaccines, like oral polio vaccinations, are made from live viruses and produce a low grade infection. Such vaccinations could be dangerous for a myasthenic receiving immunosuppression.
Also, if another family member receives a vaccination with a live virus the immunosuppressed patient may need to avoid contact. You should consult your doctor about the risks and benefits of vaccination in your particular case.
Question: Can a person with MG give blood?

Answer: There are two aspects to this question. The safety of blood from someone with myasthenia gravis for the person getting the blood, and the safety of giving blood for the person with MG.
The policy of the American Red Cross is not to accept blood from patients with autoimmune diseases, including those with myasthenia gravis.
In the case of myasthenia, there are very good theoretical reasons for this. In the study of MG, animals are made myasthenic by infusion of serum (a blood component) which contains anti-acetylcholine receptor antibodies. This would suggest that someone receiving the blood of a myasthenic could develop myasthenia. Having said this, there is no report of this occurring among humans.
The other concern is the safety of the person with MG. Patients with myasthenia have fatigue. Blood donation makes one feel tired due to loss of blood volume and red blood cells. Therefore, someone with myasthenia could feel even weaker after blood donation.
Question: I have all the symptoms of MG and not one positive test. Also, I had polio 50 years ago. Is there a test that can distinguish between these problems? The only test not done is a CT scan looking for a thymoma and the neurologist says that would be a waste of time and money.

Answer: The tests for MG (Tensilon test, acetylcholine receptor antibodies, and EMG with repetitive stimulations) individually may be normal in 10 percent of patients. A single fiber EMG is very sensitive for MG, but in a person with previous polio would also show abnormalities.
A CT scan of the chest is done to evaluate a patient for a thymoma. About 10 percent of myasthenics have a thymoma, so every myasthenic needs to have a CT scan of the chest. A CT scan would not determine if you have myasthenia, but rather whether you have a thymoma. You state you have "all the symptoms of MG," but other diseases may produce the fatigue and weakness.
Post-polio syndrome (PPS) is one such disorder. PPS differs from MG in that patients usually complain of weakness developing over years which is constantly worsening, while MG symptoms usually develop over months and show much greater fluctuation in severity.
There is no specific test for PPS. If you are frustrated with your neurologist, perhaps a second opinion is in order.
Question: How common is it for myasthenics to have other autoimmune diseases? I have been told I have myasthenia, along with arthritis and fibromyalgia. Could that be possible? If it is possible, why?

Answer: MG is an autoimmune disorder and may occur along with other autoimmune diseases.
Most often, myasthenia occurs with autoimmune thyroid diseases and pernicious anemia.
People with systemic lupus erythematosis or rheumatoid arthritis also seem to get MG as well.
Family members of those with myasthenia may have higher rates of autoimmune diseases.
Autoimmune diseases develop because of the complex interaction of genetic predisposition (your genes) and environment (everything around you). The most important factors are not known, but autoimmune diseases probably share some common reasons for their development.
Fibromyalgia is not presently classified as an autoimmune disease, nor does MG occur more commonly among patients with fibromylagia.
Question: My mother is reacting badly to Imuran, which has been prescribed to control her Myasthenia Gravis. She is also on Mestinon. Her symptoms include retching, throwing up and increased salivary flow causing her to spit up non-stop. She does fine on the Mestinon alone, but we've been told she needs the Imuran for long term use. We are wondering if there is an alternative that can be used to the Imuran.

Answer: It is important for the patient with MG to obtain information regarding treatment.
Mestinon frequently causes stomach upset and increased salivation.
Ten percent of patients starting Imuran do not tolerate the medication because of fever, flu-like symptoms, and stomach upset.
Other patients develop liver problems which require stopping the medication (vomiting could be a sign of such a problem).
Imuran is an effective treatment for myasthenia if complications do not occur.
Other options include prednisone and Cyclosporine. Each has its own problems, and treatment needs to be tailored to the individual.
PLEASE remember not to make any changes in treatment without consulting your physician.
Question: I was diagnosed with MG 20 years ago and was in complete remission for 13 years and it suddenly came back. About 5 years ago I underwent a thymectomy and am not on any medication. Sometimes I have weakened vision. Should I worry about greater symptoms coming back later?

Answer: It is impossible to predict if your symptoms will ever worsen.
The longer a patient is in remission without any medication, the greater chance s/he will never develop MG again.
However, there is never a guarantee. Some patients have 20 to 30 years between bouts of MG.
In most situations, MG causes double vision. Sometimes patients describe other visual problems, but you may wish to check with an ophthalmologist to make sure MG is the problem.
Question: I would like some information regarding MG in a 12 year old girl. She has gone through all the standard testing and was found to have a tumor on her thymus gland. Is the treatment regimen the same as in adults? What would be the long term side effects of removing the thymus gland of a 12 year old?

Answer: If an actual tumor of the thymus gland (a thymoma) is detected, it does need to be removed. Further treatment such as radiation or chemotherapy may be needed.
A thymoma is rare in children. The more common finding is hyperplasia of the thymus gland which is not a tumor.
Hyperplasia at the most basic level means that there is more thymic tissue than normal. In adults and children, removal of the thymus (thymectomy) is considered an effective treatment for MG, and children as young as two years benefit from thymectomy.
Thymectomy is not known to produce long term side effects in children. As with all questions regarding your health, the best resource is your physician.
Question: I had a thymectomy over 10 years ago. I have been in partial remission since that time, with the MG symptoms never as bad as they had been before the surgery. (I could barely walk, brush my hair, eat, hold a pencil...even while taking Mestinon around the clock...it was horrible). I'm glad that I had the surgery, however, I have had various medical and non-medical people react in horror when they found out that I had my thymus removed, because of the thymus' part in T-cell production and the immune system. My question -- does having no thymus wreak havoc with the immune system, does it make me more susceptible to flu/colds etc.?

Answer: There is no evidence that adults after thymectomy are more susceptible to any infection, viral or bacterial.
Specialized tests of immune function show minor changes in T cell functions and immunoglobulin levels.
Even children as young as 2 years are not at risk for more infections.
If you wish to read more about thymectomy and the immune system, consider reviewing the textbook, "Handbook of Myasthenia Gravis and Myasthenic Syndromes" edited by Robert P. Lisak. The book is written for physicians and scientists.
Question: I was diagnosed with MG in 1992. My initial symptoms were blurred vision and general weakness. A Tensilon test was positive for MG. Lately I have been having some really strange symptoms: I cannot feel hot or cold in my fingers (pick up hot utensils without hotpad, etc.). I rapidly rub my middle finger on my thumb. I have what my doctor calls ataxia. I have moderate short term memory loss. My question is this, should I be concerned about another problem, or are these symptoms relatively consistent with MG?

Answer: The description of your symptoms is not consistent with MG.
Patients with MG do not develop abnormal sensations or a loss of sensation. However, some patients with MG are so weak they may have problems walking, and thus may be ataxic (that is, have difficulty controlling movements such as walking).
Memory abnormalities should not be attributed to MG; it is not a disease of the brain.
Some medications used to treat MG, like Prednisone, can lead to problems with memory.
It is always important for patients with MG to discuss new symptoms or ones that concern them (even if they have had them for years) with their doctors. One should not blame MG for every problem.
Question: I take 180 milligrams of Mestinon daily and am experiencing double vision. Will this medication improve the double vision?

Answer: Mestinon is standard therapy for MG and improves many symptoms. Double vision is often the most difficult to treat.
Double vision occurs when the eyes are not precisely aligned.
The slightest weakness of a single eye muscle will misalign the eyes and cause double or blurred vision. If slight weakness occurs in another muscle in your body, you may not even notice.
Mestinon helps some patients with double vision.
Patching one eye always eliminates double vision. An eye patch is an effective first treatment although not always easy to wear. Some people find wearing a patch embarrassing, but consider the side effects of alternative therapy with prednisone.
Prednisone is a corticosteroid which suppresses the immune system and is effective in treating the double vision caused by MG.
Prednisone has a great number of possible side effects--high blood pressure, weight gain, osteoporosis, diabetes, sleep disturbance, and others.
Depending on your individual needs you should discuss further therapy with your Neurologist.

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Last Reviewed: Mar 16, 2001

Henry J Kaminski, MD
Formerly, Professor of Neurology
School of Medicine
Case Western Reserve University